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Littoral Cell Angioma

My story is not about a disease with suffering and pain like so many I found on this site. My story is about living with… Continue reading Littoral Cell Angioma

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TARLOV CYST/TETHERED CORD

I WAS BORN WITH TETHERED CORD AND WAS NEVER DIAGNOSED, TARLOV CYST IS PRESENT OR FOLLOWERS THIS DIEASE FOR SOME REASON. MINE STARTED WITH BOWEL… Continue reading TARLOV CYST/TETHERED CORD

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My life with Sarcoidosis and what it has done to me!

My Sarcoidosis story: Hello my name is Frank Rivera. I am 47 . My story actually goes back to 2004. While in Florida I was… Continue reading My life with Sarcoidosis and what it has done to me!

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Rare disease-a tragic reality in India

The World out of sync with the obscure and abstruse reality fails to grasp and shrugs at the apocryphal term VHL or von-Hippel Lindau, an… Continue reading Rare disease-a tragic reality in India

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Central Pain Syndrome: Pain from my brain‏

I live with an incurable, torturous & poorly understood pain known as central pain syndrome, CPS. CPS is caused from damage to the central nervous… Continue reading Central Pain Syndrome: Pain from my brain‏

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spcd

My daughter is diagnosed with a rare metabolic disorder spcd (systematic primary carnitine deficiency) she almost died at the age of 14 months due to… Continue reading spcd

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Fighting H.A.R.D.

I am Allie, and I am starting an organization for other kids like me who have rare diseases. We are raising money and awareness by… Continue reading Fighting H.A.R.D.

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Estou doente e cansada de estar doente e cansada

Viva, O meu nome é Alexandra Manata, tenho 44 anos, resido em Ermesinde, casada e tenho um filho de 11 anos. Sou licenciada em Ciências… Continue reading Estou doente e cansada de estar doente e cansada

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Morvan’s Syndrome

My name is Christine & I am writing this in regards my to son, Justin. We reside in Lake Stevens, WA. On March 30, 2010,… Continue reading Morvan’s Syndrome

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